Lewes mom dedicated to caring for severely disabled son

Wednesday

Jul 26, 2017 at 8:00 AM

Struggling to pay for handicapped-accessible bathroom

Caeden Millman, of Lewes, was born by emergency Caesarean section after just 22 weeks of gestation.

His mother, Brea Millman, was 28 and living in Montana. During the short pregnancy, she developed preeclampsia, which, according to the Preeclampsia Foundation, is “a rapidly progressive condition characterized by high blood pressure and the presence of protein in the urine.”

In the United States, about 5 to 8 percent of pregnant women develop preeclampsia, which is among the top causes of pregnancy-related deaths. Brea, however, was one of just 15 percent of preeclampsia sufferers to develop HELLP syndrome, an acronym that indicates the symptoms: hemolysis (the breakdown of red blood cells), elevated liver enzymes and a low platelet count. Infants of mothers stricken with HELLP syndrome have a perinatal (immediately before or after birth) mortality rate of anywhere from 7.7 to 60 percent, depending on a variety of factors.

“My body was basically rejecting the pregnancy,” Brea said. “My liver and kidneys had shut down and my blood was clotting. Both Caeden and I were very sick. There wasn’t any choice in the matter.”

The doctors told Brea her baby would have a 1 percent chance of survival. Caeden came out of the womb weighing 1 pound, 1 ounce.

On June 25 of this year, Caeden turned 16.

Caeden’s health

Infants born as premature as Caeden suffer from myriad health problems, and their life expectancy is significantly shorter than average. In fact, Caeden’s life in itself is a medical anomaly.

“His doctors are shocked he’s made it this far,” Brea said. “They say it’s amazing that he’s here and that every day is a blessing.”

Caeden sees a variety of doctors about once a week in Wilmington, but immediately following his birth, he spent four months in a Montana hospital on life support.

“There was no moving him,” Brea said.

Because he was so premature, Caeden was born with very little lung tissue and had to be on oxygen 24/7. He still needs it occasionally. Eventually, doctors diagnosed Caeden with bronchopulmonary dysplasia, a lung disease common in prematurely born infants that can cause lifelong difficulties with breathing.

When Caeden was three years old he was diagnosed with severe autism. According to Brea, he is verbal but chooses not to speak. Because his autism makes it hard for him to communicate, in the past, Caeden would express frustration by flailing violently, sometimes harming himself or others. Brea refuses to medicate him.

“I can control most of his emotional stuff through his environment,” she said. “I don’t knock anyone for using meds if they feel it’s necessary, but the way I’ve set it up, I can control his outbursts by just staying home. Going out is what causes problems.”

Brea said Caeden reacts strongly to having people in his “space,” about a 10-foot radius surrounding him. He’s also set off by bugs and germs, which he is terrified of, and doesn’t like to be touched.

Recently, however, Caeden’s outbursts have been happening much less frequently, and Brea believes that’s due to his latest health problems. Caeden has always had trouble swallowing, and in late 2015, stopped swallowing altogether.

“He would always tic really bad when he had to eat or drink, and I think one day he just realized he didn’t have to,” Brea said. “Eating and drinking have always been major stressors for him.”

Doctors had Brea try all kinds of things to get Caeden to eat and drink, but in March of 2016, after he lost a significant amount of weight, they agreed to place a feeding tube in his abdomen. At that point, however, the lack of nutrition had left Caeden’s stomach in no shape for surgery.

“It was a bloody, inflamed mess,” said Brea.

Without any other options, doctors started him on total parenteral nutrition, which supplied all the nutrients Caeden’s body needed directly to his bloodstream via an intravenous tube, and sent him home. Brea was terrified.

“They sent me home without any education, and this thing goes straight to his heart,” she said. “It would only take one air bubble, one infection to kill him. I was running on zero sleep. I was so scared; it was horrible.”

Four months later, Caeden’s stomach had healed enough to allow for surgery. His abdominal wall now has a cap on it that can be opened to insert the tube. Brea is constantly switching between food and water; the tube is not in use for only about six hours a day. When in use, the tube must be monitored to make sure it is properly in place and that Caeden isn’t having any trouble digesting the fluid.

While Caeden’s inability to swallow is no blessing, it does have one benefit: he has far fewer violent outbursts. If he does have an outburst, all Brea has to do to prevent herself from being harmed is get out of the way, because Caeden can no longer walk.

Caeden became so malnourished in the months before getting the feeding tube that he became too weak to walk. On top of that, his vascular system isn’t working properly, causing a lack of blood flow to his limbs. His feet turned black for a time a few years ago, and doctors believe that walking is painful for him now. He has balance problems, too, caused by kyphosis, which is a forward curvature of the spine.

“He’s doing a little better now,” Brea said. “He can walk maybe 10 steps if I ask him to, but he shakes because he’s weak. Before, he could walk around the house, walk to the bathroom. We only used the wheelchair when we went out. But now, my hallways aren’t wide enough for the wheelchair. My bathroom isn’t big enough.”

Caeden has never been potty-trained, likely due to his autism, and has been in diapers his entire life. Brea changes Caeden’s pull-ups five or six times a day, and since diapers leak, his bed sheets usually have to be changed. So the reason he needs access to the bathroom isn’t the toilet – it’s the tub.

“I can’t lift him in and out of it anymore,” Brea said. “He’s too big. He only gets a bath about once a week now. The rest of the time we use wipes.”

Brea realized some time ago she needed a bigger, better bathroom. She researched the idea and started calling contractors. She looked into programs offered by the state and charity groups. Nothing she found, no one she talked to, made the project anywhere near affordable. Finally, Brea’s parents offered to loan her the bare minimum required to build the addition, and she graciously accepted. Construction began in June.

Brea’s story

Brea, now 44, lives outside of Lewes, where she grew up. After high school, she wanted to leave Delaware, so she got out a map, closed her eyes and pointed. Her finger landed on Montana. She dragged her father out there to look around and ended up buying a cheap but large piece of land, which she worked throughout college to pay off.

Brea went to the University of Delaware, where she obtained bachelor’s degrees in Spanish education and French language and literature. Immediately after graduating, she moved to Montana and built a small house on her property. She started teaching and working odd jobs to pay her bills, and began making lip balm as a hobby.

“When I was in my early 20s, I became a vegan and went more natural - way before it was, like, a thing,” Brea said.

She started researching natural lip balm recipes and experimented until she was able to make a decent product. At first, she continued to work full time and sold her homemade lip balm to friends on the side.

“After I got pregnant and I found out I might be having a disabled child, I thought I better seriously try to develop the lip balm into a legitimate business,” Brea said, and did just that via an online store.

Brea’s business is called My Lip Stuff, and it’s fairly popular and successful. When she first started selling it, My Lip Stuff and Burt’s Bees were virtually the only natural lip balm companies in existence.

“[My product] got noticed by a group of people through a weird series of events, and became kind of a cult favorite,” Brea said.

She capitalized on her success by creating over 800 different flavors and custom labels, and brought the home-based business with her when she moved back to Delaware.

“I didn’t have any intention of leaving Montana,” Brea said. “But Caeden was born so sick and my parents said they would help.”

Even after making the decision, Caeden was too fragile to travel until he was 2 years old. Brea sold her house and came back to Delaware in 2003. Her parents gave her a piece of land on their property outside of Lewes, and Brea used the money from selling her home in Montana for a modular home.

“It came in two pieces and was put together on the property,” she explained.

Housewrap has been considered an essential part of the homebuilding process for decades. After building the wood frame of a home, it’s covered with housewrap to protect it from the elements. Without it, the wood is subject to moisture, which leads to rot and mold.

For unknown reasons, housewrap was not installed on about one-quarter of Brea’s home. The contractors discovered it as soon as they started on the addition. Brea was devastated.

“The wood was crumbling,” she said, shaking her head incredulously. “I had taken away every possible contingency with the cost. There was no leeway.”

There seems to be no end to Brea’s struggles. A year ago, she started having trouble breathing and was diagnosed with sarcoidosis, a disease that creates granulomas (small, benign tumors) in certain organs. The cause is unknown and there is no cure.

“A lot of people go into remission and it doesn’t affect them too much, but for some reason mine has gotten a lot worse,” she said. “I only have 50 percent lung capacity. The doctors said my throat and lungs look like cobblestone.”

Brea developed sarcoidosis in her brain and heart. Fortunately, her doctors caught it and started her on steroids, which stop the disease from spreading and alleviate the symptoms. Before going on the steroids, however, Brea had heart palpitations, chest pains, a racing heart and reduced cognitive function, and it left her unable to work.

Medicaid pays for Caeden’s healthcare, and he receives a small Social Security check monthly. Caeden’s father has never been involved in his life, so over the year Brea has been unable to work, she’s had no choice but to use credit. Thus far, she’s accrued around $20,000 worth of credit card debt.

Social media to the rescue

Enter Nicolette Dollaway, of Interlochen, Mich. She once bought lip balm from Brea and friended her on Facebook. She’s been following Brea and Caeden’s struggles and was moved to do something when she found out about the water damage.

Dollaway started a GoFundMe page to help raise money to fix the water damage at the house, and shared the fund on Facebook. So far, it’s raised about $3,500.

“I’ve read her posts over the years about being a single mom to Caeden, and I can tell she is an amazing parent,” Dollaway said. “She’s pushed her own health to the back burner in order to focus on his needs. She loves her son, and there is no doubt that she would do anything to make sure he is comfortable and living the best life he can.”

Caeden doesn’t go to school because it aggravates his autism to a point at which he injures himself and others. Brea homeschooled him for a time, but he has never been able to read or write. His favorite thing to do is play Minecraft, a video game.

Brea gets emotional when asked about her son’s quality of life.

“I’ve asked him if he’s happy, because it’s always seemed like he’s just angry or unhappy all the time, but being autistic, he doesn’t experience things like we do. He actually says he’s very happy. The only thing he said he would change is to be allowed to play video games all the time,” Brea laughed. “If he could do that, he said, his life would be perfect.”